Thursday, October 30, 2014

As Breast Cancer Awareness Month comes to a close, I thought what better time to announce I'll be walking again in the Avon Walk for Breast Cancer? Because if I'm going to advocate for action, this is an act I can take. I can still walk. I can write about my experiences. If that helps one other woman speak up in her doctor's office when she might have otherwise ignored the twisting in her gut about a lump she'd found? If I can do that, I've at least done something.

I choose this walk because Avon provides funding for women who can't afford treatments. I've talked before about how earth-shatteringly lucky I am to have the insurance I do. To have friends who've told me to go ahead with treatments and I can pay them back later (an offer I haven't yet had to take). Not everyone is so lucky, and Avon helps bridge that gap. Avon also funds life-saving research, and you know how I feel about research. You can read more about their mission by clicking here.

Next spring, I'll be flying back to my old stomping grounds -- Washington, DC -- to walk with a team of women, old friends and new from all over the country, to raise money for this organization that has done so much for people facing this vile disease. While I'm there, I'm hoping I can brush up on my lobbying skills and take my message -- that this can and does happen to young people, that we need more research funding -- to Congress (starting with my state representatives, but to anyone who will listen, really).

Do you want to join us?Support our team with a donation? Make signs to cheer us along as we wind our way through the halls of Congress? We welcome the support. I appreciate it more than I can express.

This will be my 4th Avon Walk, and to date, I've raised more than $30,000 for the cause. Last year alone, our team was able to donate more than $16,000. We're hoping to blow that number out of the water this spring. If you'd like to help us do that, please click here. And thank you. It means the world to me.

Monday, October 27, 2014

Suddenly, it's almost the end of October. The pink parade is tapering off, and I hope starting to change directions toward a more educated discussion, toward more action, toward life-saving research. I'm back to digging up the research I can find to share it with you here, back to writing my book (seriously, honestly, I'm almost done), back to brainstorming ideas for getting our voices heard.

"The CDK 4/6 inhibitor has already won breakthrough drug status at the FDA. The PDUFA date for palbociclib will fall on April 13, 2015, as Pfizer seeks an OK to market it for women with advanced or metastatic ER+, HER2- breast cancer."

Just in time for Halloween, this spooky story might change how we look at cancers long-term (and help explain why it is typically so much better to treat cancers early in their lifespan).

"By the time patients are sick enough to be diagnosed with cancer, their tumors will have developed down multiple evolutionary pathways, making it extremely hard for any one targeted medicine to have an effect.

The findings show the pressing need to detect lung cancer before it has shape-shifted into multiple malignant clones."

There is plenty of talk out there about diets and cancer (avoid sugar, eat plant-based diets, drink alkaline water, etc.) All of that is well and good and may ultimately help fuel your body to better stave off cancer to begin with. But here is some research suggesting that cancer cells that metastasize do consume a special diet, fed by a certain protein. Scientists are looking at ways to starve those cells.

"In other words, some cancer cells are programmed to eat at home, while others have a special diet that allows them to travel to other sites. If there was a therapeutic way to stop the migrating cells from packing a lunch ahead of time, it could potentially halt their journey. Suppressing PGC-1α appears to do just that."

This one is courtesy of my friend Ginelle. It's about using sound waves to open the blood-brain barrier to allow chemotherapeutic agents an entry point for a brief period in order to treat cancer that has spread to the brain (typically very difficult to do). Cool, cool stuff.

"The funds provided by the CDC will be used by the Breast Cancer Program to assemble education materials, enhance delivery of care for patients, develop individualized prescriptions for wellness and implement research discoveries for young women with breast cancer to reduce overall breast cancer death rates."

"The study was published in the journal Stem Cells, and could represent a breakthrough in cancer research, allowing the cancerous cells to be killed and the healthy ones to remain intact, as the toxins in stem cells only target the cancerous cells.
Scientists have applied for approval from the FDA to start the clinical trials of the method.

Experts praised the study as “the future” of cancer research.

“This is a clever study, which signals the beginning of the next wave of therapies. It shows you can attack solid tumors by putting minipharmacies inside the patient which deliver the toxic payload direct to the tumor,” Chris Mason, a professor of regenerative medicine at University College London, who was not participating in the study, told the BBC."

Friday, October 17, 2014

I had chemo this week, on Monday. As usual, I've been in a type of fog all week. My mother-in-law is here visiting, and asked me to describe it. She wanted to understand what I was experiencing, and, by extension, what my father-in-law might have experienced when he was being treated for pancreatic cancer.

I struggled for the right words, but came up with this: "I just feel like my head is in the clouds."

It's like my thoughts are fluttering types of insects now, buzzing all over the place without ever standing still long enough for me to grab hold of one. As chemo week ends, it gets slightly better, but I'm not sure I fully recover between infusions.

And I struggle with how to manage my emotions, how to answer difficult questions, how to be a more present parent.

***

After chemo on Monday, I thought I could take Quinn and my mother-in-law grocery shopping with me, so that Chris could get some work done. And I don't know if Quinn is going through a growth spurt or this is just him being three or me getting chemo, but mid-afternoons have been rough for us lately. Like he needs a nap but the best I can hope for is some downtime in front of the t.v. for an hour.

So pumped up on steroids and not yet starting to feel any side effects (I didn't think), I attempted to take my 3-year-old to the grocery store. It was exceptionally crowded at Trader Joe's, and I tried to convince Q to sit in the seat of my cart rather than get his own cart -- those miniature ones that TJ's offers for kids, which are such an adorable idea in theory. But Quinn would not be deterred, and I didn't think I was up for the fight. I told him he could have his own but he had to stay right next to me. He said he would.

I can see so many of you with kids already know where this is going.

First thing inside, right next to the salads, as I was trying to navigate the limited space between the employee restocking shelves and the elderly couple in front of me, Quinn started ramming his little mini-cart into my ankles. To his credit, he was staying right next to me. "Please stop, buddy," I asked him gently a couple of times. He didn't. My ankles were taking a beating. "Quinn, if you don't stop, you're going to have to sit in my cart," I reminded him, my voice getting more stern as I got more annoyed.

People were starting to stare at us. My son had already turned this into a game in his head. (He told me later he was just trying to be silly.)

I couldn't do it. Not on steroids, not after chemo, not in a crowded store. So I picked him up -- at which point he started screaming and kicking -- and said nevermind, we were going to skip grocery shopping that day. He kicked a shoe off in the parking lot on our way back to the car. A stranger kindly picked it up for us. He refused to sit in his carseat. It was close to 100-degrees outside, and I was out of breath from the walk to the car with a flailing child in my hands. I was also out of patience. He kicked me in the ribs as I tried to wrestle him into his carseat.

Nearly HALF AN HOUR went by. He was screaming, I was crying, cars were lining up waiting to pull into my spot as I tried to wave them along. I called Chris, who says I was so hysterical he thought I'd gotten into an accident. And then I growled at Quinn in a voice that sounded (even to my own ears) like I was possessed to GET IN YOUR DAMN CARSEAT. He finally relented.

Thank you, chemo and steroids, for making me realize that I can, in fact, growl at this three-year-old (in front of my mother-in-law, no less). This is not the parent I want to be.

We both calmed down on the ride home, and we talked about what went wrong. Quinn and I promised each other we'd make the next day better (and we did).

This, after my nurses cut my steroid dose in half a couple of sessions ago so that I would have less emotional reactions on my chemo weeks. The flip-side is my chemo side effects are bigger and badder, and I'm pretty certain I still have 'roid rage.

I have felt terrible most of this week, because that's what chemo does with less medication to offset it. A doctor I follow on Twitter suggested asking my oncologist about not taking steroids at all, to take the emotional effects out of the equation. Or it could also be that, after seventeen months on this drug, its effects are building up in my system and this is just the way it is.

***

Fast-forward to this morning. Quinn woke up next to me (as he is wont to do; he inevitably sneaks in at some point in the middle of the night), and sweetly asked for a hug. Then we had this conversation:

"Mommy, why are you a little bit sad?" I hadn't been feeling a little bit sad, I didn't think. Nostalgic, if anything.

"Because you're growing up so fast, and I want to remember all of it," I said and smiled at him.

"Well, I'll remember it!" he promised. Then, this zinger: "Mommy, are you dying?"

I hugged him tighter so he wouldn't see the tears that immediately came to my eyes, the emotion that made me feel like my chest might crack in two. "Not anytime soon, honey," I told him.

"I want to remember when you die," he said. Then, "What does 'dying' mean?" Why did we have to have this conversation at 7:15 on a Friday?

"It means when someone's not here with us anymore," I tried.

"Oh." He thought for a minute. "But I want you to stay here with me in this house forever!"

"I want to, too, buddy. I'll stay as long as I can, okay?"

***

Man, it's been a long week. Here's to easier conversations and fewer side effects and being a more mindful parent in the weeks ahead. Other parents, how do you talk to your toddlers about cancer? How do you manage your side effects with children around? And, finally -- more steroids or less?

Monday, October 13, 2014

Today, October 13th, was National Metastatic Breast Cancer Awareness Day. Metastatic (or Stage 4) breast cancer is what happens when tumor cells leave the breast and set up shop elsewhere in the body, usually the lungs, liver, brain, bones, or skin. Of course, I'm weird and had spots in my lymph nodes and spleen.

My links today are primarily focused on metastatic breast cancer. Consider this a dose of true October awareness. And if you're feeling so inclined, a great place to donate (even $5) is www.metavivor.org, which allocates 100% of its grants to funding research on metastatic breast cancer.

"While MBC claims the lives of 40,000 women and men in America every year and 20-30% of those diagnosed
with early stage breast cancer will go on to develop recurrent, metastatic disease, awareness remains low and
only 7.1% of breast cancer research investments over the last dozen years were focused on MBC."

"As hard as it would be to hear, metastatic cancer is not a death sentence. Survival rates for people with metastatic cancer varies from person to person, but a large study found that 15 percent of women lived at least five years after being diagnosed. Some women may live 10 + years beyond their diagnosis and since these studies were conducted, newer metastatic breast cancer treatments have become available. This leads us to believe that the survival rate for a metastatic patient has improved since these studies last occurred."

"FACT: Breast cancer progression can occur regardless of treatment or preventative measures taken – Half of people surveyed said they believe breast cancer progresses because patients either did not take the right treatment or the right preventative measures, signaling the potential stigmatization of people with metastatic disease. In reality, breast cancer can spread quickly and inexplicably, regardless of treatment or preventative measures taken."

Prior to my diagnosis, I didn't realize women my age could even get breast cancer. Sadly, I was sorely mistaken.

"According to the American Cancer Society, there are an estimated 250,000 breast cancer survivors living in the US who were diagnosed at 40 or younger, with around 13,000 new cases expected annually. While that accounts for less than 6 percent of cases in a given year, studies show that young women are more likely to have aggressive forms of the disease."

The profile of one woman who beat the cancer odds -- "And The New England Journal of Medicine published her story on Wednesday as a case history in the new genetic era. It concludes with a lesson that may help doctors treat thousands of patients with more common cancers, like breast and bladder cancer, and even find an alternative when a drug stops working."

I'm all for wearing pink if it brings some research dollars in or encourages a young woman who didn't think breast cancer could happen to her to push her doctors for more answers. But yes, yes, yes on the gimmicky and commercial.

"For those of us who advocate for the “cause” – as I see it: the need for more breast cancer research and better care for all affected – a calendar-based theme feels gimmicky and commercial, even manipulative. At best, it’s useful for fundraising. In some parts of the world, including a few U.S. communities where believe-it-or-not stigma about having cancer persists, NBCAM may lead a few women who are hesitant to seek care for breast tumors to go and get it."

Wednesday, October 8, 2014

In the middle of a painting session with Quinn yesterday afternoon (in which we painted heart-shaped pumpkins and talked about how to mix red and yellow to make orange), my oncologist's office called. As it happens every time I see their office name on my phone's screen, my heart leapt into my throat. Was something wrong with my blood work? I couldn't help wondering.

It was something much more benign than that (pun intended). They've scheduled my next CT scan -- how can it possibly be that time again already? -- and wanted to pass along the details, to remind me of the rules even though the routine is painstakingly familiar at this point. I know I can't eat or drink for hours beforehand. I know not to wear any jewelry to the appointment. I know where to check-in and exactly which months-old magazines will be available for me to browse while I wait. I remember.

I swirled my paintbrush in a cup of water and watched it turn a murky shade of orange. The phone call took just a few minutes, and I've learned how to bounce right back into mommy mode, how to not skip a beat in my activities with Quinn, how to put on a brave face, even when my head is already starting to swirl with what-ifs.

***

Quinn made a comment the other day about what it is each of us does: "Daddy goes to work, I go to school, and mommy goes to doctor's appointments! Right, mom?" Oh, buddy. I am so, so sorry.

***

I've had a headache for nearly a week. It's probably hormonal, or it could be that one week into October and I'm already exhausted by the onslaught of awareness (although the conversation is starting to change!) It could also easily be because I have a terrible habit of grinding my teeth while I sleep. I wake up and my jaw muscles are sore from the tension I can't escape in the middle of the night.

But I also know that somewhere around 50% of metastatic patients with Her-2+ breast cancer end up with brain metastases because chemo doesn't cross the blood-brain barrier and cancer cells do.

I read this blog post by an oncologist the other day. He talked about an evening when he was sitting out with friends and watched a falcon descend upon a covey of quail, which he turns in to a metaphor for living with advanced cancer. He also writes about how "chronic" is not really an accurate descriptor, although it has been the one my doctors have used most with me.

This line in the blog post hit home: "If you have metastatic breast cancer you are walking around under the cloud of a death sentence, any temporary stay of execution provided by fulvestrant or T-DM1 notwithstanding." T-DM1 is the drug I'm on.

And so already, my scan a month away, my head swirls with the what-ifs -- how long will this temporary stay be? When will the next big scientific breakthrough happen, and will it be soon enough? Am I strong enough to face chemo-chemo again, if this drug stops working? Why does my head hurt so much? But I have learned to reel myself in, to go back to the moment, to keep painting.

This last line from the oncologist's post also stuck with me: "And then, much more quietly than the quail and more slowly than he had arrived, the falcon took off, talons empty: not today. Not today. Not today!"

Monday, October 6, 2014

In the chaos of the last week, I realized I've fallen behind on posting my finds from around the Internet (which I referred to as the "web" in a conversation with my college-age nephew this weekend, and he looked at me like I was eighty). Here are the things that have grabbed my attention over the last couple of weeks. There has been a lot, given that it's Breast Cancer Awareness Month, so I've tried to whittle it down.

I am so incredibly fortunate that we have excellent health insurance. The year I had my bilateral mastectomy, insurance covered more than $250,000 worth of bills for us. My targeted chemo costs more than $10,000 per month. Not to mention, most people (me included) struggle to maintain a job while going through treatment, so then how do they maintain health insurance coverage if they're not married? The Affordable Care Act was a solid first step, but more could be done to ensure access to care without fearing that you'll have to file bankruptcy.

"Patients who received the drug — Perjeta, from the Swiss drug maker Roche — had a median survival time nearly 16 months longer than those in the control group.

That is the longest amount of time for a drug used as an initial treatment for metastatic breast cancer, the researchers said, and it may be one of the longest for the treatment of any cancer."

While this drug worked for me, I ultimately had a recurrence while on it. But I am doing remarkably well on the next-generation of drug produced by Genentech/Roche (Kadcyla). We need continuing research into how to stop metastatic cancer.

"Marathon Barbie," as she was known, was serving our country in Kandahar, Afghanistan, when she found her lump. Maybe it's because my baby brother just came home from there that this story hit so close to home to me. You don't expect cancer to be the thing that kills you when you deploy to a war zone.

"Susan G. Komen has awarded more than $2 million in grants for cancer researchers at the University of North Carolina at Chapel Hill and Duke University, the breast cancer organization announced Wednesday."

"Harvard Medical School investigators at the Massachusetts General Hospital Cancer Center pinpointed several different classes of pancreatic CTCs and found unexpected factors that may prove to be targets for improved treatment of the deadly tumor."

"so before you gag at all the pink products this month, know that many help raise a lot of money. do your research. it’s like the ice bucket challenge. it’s cool to do it and send in a donation. not as cool to do it just to be funny and not contribute a penny. if you can afford a device to record a video, you can afford to donate $5."

Friday, October 3, 2014

When he learned I was going to be on the TODAY show, Chris joked that he was every-so-slightly disappointed that Natalie Morales wouldn't be coming to our house for the interview. I like to think he has a thing for smart brunettes. As always, he is my strongest supporter. I was glad to see he and Quinn got some face time in the segment.

I have been overwhelmed by the outpouring of support from my community -- friends, family, sisters in mets, and people I don't even know have rallied behind me. Thank you guys. I am slowly digging my way through the emails and comments (tough when Quinn pulls my phone out of my hand and yells "No more screen time, mom!"). Touché, kid.

Anyway, here is the segment I did on TODAY. I am encouraged by Joan Lunden's call for more funding for metastatic breast cancer, which is the only way those of us with Stage 4 are going to beat this thing. You can read the accompanying article here.

As I wrote on the Huffington Post, "When we are loud enough, our voices are heard. Slowly, the conversation about what metastatic breast cancer is and how we're going to address it is beginning, and the face of "awareness" is changing. I am honored and humbled to be a part of that progress."

Wednesday, October 1, 2014

My post on Monday garnered a lot of attention, to say the least. Combined with posts, tweets, and emails from dozens of us in the metastatic community, something clicked, and I was contacted Monday afternoon by a senior producer at the TODAY show who had seen my blog post.

It took a solid ten minutes to pick my jaw off the ground.

She was exceptionally warm and apologetic about how things had been handled last week, and promised me she'd do her best to make this right. She is also a breast cancer survivor. We had an exceptional conversation, and then she asked if I'd be willing to share my story in a segment she was putting together to air Thursday morning.

I didn't hesitate. Of course I'd take advantage of such a huge platform to share some real information about living with metastatic breast cancer. It came together quickly. A production crew was at my house filming and talking to me about my experience for three hours yesterday.

The producers at TODAY have been incredible to work with, and I trust that when all of this boils down to 2 minutes tomorrow morning, they will do justice to my story -- our story -- one that isn't often told amidst the pink hoopla of October.

I hope I make this community proud. To all my sisters in mets, I tried to speak from the heart, to beg for more research as it is our only chance of surviving, and to educate about what it means (and looks like) to live with Stage 4 breast cancer.

I'll be holding my breath watching with the rest of you at 8:15 tomorrow morning (and then I'll post the link to the segment here when it's available). As always, thank you all for your unwavering support.

Welcome

Writing about my journey at the intersection of metastatic breast cancer and motherhood. Diagnosed with Stage 4 cancer at age 32 and when my son was just five months old, this is the story of how I've learned to take life one day at a time -- through treatment, potty training, and, eventually, recovery.